Sunday, August 22, 2010

All went well! You gotta see BABIES!

2 down, 2 to go for every 8 weeks for Remicade for Charlotte! This is her treatment plan for her arthritis, Remicade is a TNF (protein) inhibitor (they are the messengers to the white blood cells, so they are killed, therefore no more white blood cells are created - she has too many right now with arthritis, the immune system is on overload.). Remicade is an IV drip that takes about 3 hours. She's been doing it for 2 years and now we are on the weening process & have completed round 2 out of 4 / of every 8 weeks. Then we will do four sessions every 10, then every 12.

It went well, better than the last time in the nurse's point of view & that's always important. Charlotte still resists when its time for the poke & we literally have to yank her arm down & hold it while restraining the rest of her body. It would be insane if you saw it for the first time :) And while she freaks out the veins shut down. Literally. We have to continue to remind her to stay calm because even if the needle gets into the vein, the vein is on freakout mode & shuts down... we cant stand that because then we have to poke again if we cant get it to flush & start flowing....

She calmed down after awhile... the 1st poke worked finally after the relaxation. And we got going.

You know what calmed her down? Babies. The documentary. Have you seen this? So stinkin' cute we watched it twice! But it gave her something to focus on that wasn't loud or crazy, it was calming & interesting.

It's on demand right now. We loved it! I highly recommend!!!

Wednesday, August 18, 2010

Treatment day.

Anticipating Charlotte's treatment day tomorrow. Hubby has been on the road all week, so I must face this event on my own. Anxiety of my own, anxiety of my child, parenting the other children & nurturing the dog as well, are all things that are on my mind. I want to clear it and anticipate ease of "the poke", quick flow of meds, uneventful morning and get to the pool by the afternoon. So that is what it shall be. I celebrate Charlotte in her stage of life & appreciate the drugs in their work and know that this too shall pass!! This will be the 2nd dose of the 4 doses every 8 weeks of Remicade. Only 2 more of 8 weeks: October 14th then a few days before Christmas. We can do this....

Tuesday, August 10, 2010

Ice Packs that Conform to the Body

Children with arthritis flare ups need heat to help with mobility. But once they are mobile & learning to ride a bike or take off in rollerblades down the driveway, they might need an icepack! Here's a great tip from Heloise (thank you Washington Post)! (Below, Charlotte's sister Ellie is our most adventurous girl with the scrapes to prove it but the tough mentality to keep enduring (I have the hair coloring appointments to prove it). You might see her on the x-games someday!)
By Hints From Heloise
Tuesday, August 10, 2010
Dear Heloise:
A nurse friend gave me this hint for an excellent ice pack that conforms to any part of your body. Put 1 cup of rubbing alcohol in a zippered freezer bag along with 3 cups of water. Seal the bag, put it into a second freezer bag and freeze. This concoction will freeze into a slushy mixture.

If you want a more solid mixture, use more water and less alcohol. Caution: Do not put directly on skin.

Lucy J. in Maine

Lucy, this is a good hint that bears reprinting. Be sure to label the bag and add a few drops of food coloring to identify the ice bag

Thursday, August 5, 2010

Big Wheels Keep On Turnin'

Sometimes my snap & shoot camera disappears ... then a day later, reappears with interesting photos of its adventures....This time it captured what my girls are loving to play this summer when they are not at the pool: CARS. These girls LOVE cars.... I imagine (but can't be certain) that they play with them differently than boys.My girls cars are in families, go out to dinner, visit each other's houses & head to amusement parks. They drive to get there. But its very much like Disney's Pixar CARS the movie...
Cars are the coveted toy if we are at Target... its the carrot if we need to bribe... its the reward if we want to commend. Its interesting play to me & I find it fascinating to listen to. And then it carries over to the real roads, they are naming off auto-makers. While I go, "huh?! the black one?"